Changing the way you look at things eases caregiver stress

Thanks to each of you for reflecting and offering comments on the sensitive issue of Alzheimer's and divorce. I think Allan captured the essence of what most of you expressed. "This is such a highly personal matter ... one size cannot possibly fit all ... be careful not to judge too harshly whatever decisions a caregiver spouse makes," he said.

Whether you see things the way John does or not, his words were eloquent: "That I might take a companion, even as a lover maybe, in no way lessens or impugns the devotion and commitment I feel to her (my wife with Alzheimer's) ... Indeed, it represents a cherished endorsement of our treasured years together that I should think so highly of our companionable relationship that I might want another."

And Tom wrote, "... my wife ... is still in early stages ... I have asked her how she would feel if a relationship with someone else were to happen if and when she no longer knows who I am. She knows that I ask the question with full intention to continue to love her deeply, to stay engaged with her, and to provide for all of her needs. Understanding all of that, she has encouraged me to be open to that possibility. I don't honestly know how I feel about it ... I only know that I am glad we had this conversation."

Tom offers a powerful message about the importance of having (even tough) conversations with those we love and care for while there is still time. In addition, it's a reminder that each of us still has the opportunity to have our wishes understood around living and dying.

No matter where each of us sits on this issue, someone we love is both here and gone. The relationship has changed and will never return to the way it was. This is that ambiguous loss I mentioned in the last blog.

In a book titled "Loving Someone Who Has Dementia," author Pauline Boss, Ph.D., writes, "When there's no cure to an illness or condition, the only window for hope is to become more comfortable with ambiguity and a less than perfect relationship." She goes on to speak about how rigid thinking blocks our ability to cope. In other words, when we think we ought to do it this way, or we should feel this and not that, or there is a right and wrong choice to make, we experience excess stress.

Dr. Boss provides caregivers a way of thinking that can help reduce stress. She offers a dualistic view that encompasses a "both — and" way of thinking. Here are some examples:

She is both gone and still here.

I take care of both him and myself.

I am both a caregiver and a person with my own needs.

I both wish it was over and wish my loved one keeps on living.

I am both sad about my lost hopes and dreams and happy about some new hopes and dreams.

Life as I see it is full of situations that lack a clear solution or a right answer. And with dementia when the losses are ambiguous and the decisions left to caregivers have unclear or less than ideal outcomes, the process can be heart wrenching. A way to lessen stress may come when a caregiver can balance two competing ways of thinking — I am a loving spouse (and caregiver) and need time apart from my husband. The ability to replace absolute ways of seeing things with a tolerance for ambiguity (yes, it may be incredibly challenging) opens up new possibilities for hope, contentment and possibly joy.

Back to Tom's blog comment about having a discussion with his wife in the early stages of AD. He offers a reminder to all of us about the value of having our wishes understood as best we can. There are several tools available that can assist in having these conversations.

A precious gift we can offer those who love us is a better understanding of our own values, likes and dislikes, medical choices and spiritual beliefs. Two sites that can help are: www.honoringchoices.org and www.agingwithdignity.org/five-wishes.php.

"If you change the way you look at things, the things you look at change."

Thanks a bunch. You have opened a line of thought that is new to me. Don't know yet if I agree, but the thought of a loss of a great lifetime relationship is devastating Thanks a bunch. You have opened a line of thought that is new to me. Don't know yet if I agree, but the thought of a loss of a great lifetime relationship is so devastating~! For me, this blog is great in illustrating the dilemma I would face. Thanks

keith

August 26, 2012 5:51 a.m.

No one can generalise in such matters.While some people are able to do without another partner,some cannot.

sanjit

August 25, 2012 6:27 p.m.

Ella, Thanx for taking the time. We have an appointment with a gerontologist but it is not until September 27. My husband is 78 and just had a colonostomy. But HE had made the decision as his AD is not that advanced yet and I couldn't deny what the surgeon suggested, although I would not have opted for one myself. I find it difficult to make decisions for someone else. There needs to be more support groups for caregivers - as I didn't even realize I was being ever so slowly drawn in.

Dee

August 24, 2012 3:53 p.m.

Jane: I share your feelings though I could not express them so eloquently. I no longer have what I once had with my husband, but what I have is enough.

Ana

August 24, 2012 12:02 a.m.

Spouses who care for their spouses with AD have need and wants, too. Unfortunately, a life is put on hold when a spouse becomes a carer for the spouse afflicted with AD.
When before there were two minds discussing, working on and deciding about things in their daily lives, there is only one person now to decide and attend to ALL of these things, aside from being the carer for the spouse with AD. AD is not a &quot;routine&quot; health problem, it has pleasant and not-so pleasant days, to put it mildly. And the carer is faced with these challenges everyday.
Yes, I definitely agree, a change of reaction to the situation will make the life of an AD carer less stressful.

Paola

August 23, 2012 10:27 p.m.

When couples marry they vow to take life as it comes together. The definition of infidelity is not altered if one's spouse has Alzheimer's Disease. I agree with Margaret that the idea of asking a spouse with AD for permission to look for a &quot;replacement&quot; is offensive. I long for the sexual relationship I once had with with my husband but believe discarding him for another because Alzheimer's Disease robbed him of virtually everything including his sexuality is plainly immoral.

Linda

August 23, 2012 9:40 p.m.

Dee: I recently read an article about what treatments doctors undertake for themselves. They do not believe in heroic last ditch measures -- for themselves. I would keep that in mind when deciding on their recommendations for their patients. For the first 9 years, when my husband was mobile, I took him for all the tests and procedures and our days were spent in doctors' offices and hospital labs which exhausted both of us. Looking back I realize how unnecessary much of this was -- for instance, suggesting he get eyelid lifts which would have meant problems with his blood thinner! So I questioned the need and luckily we did not do that. (Count at least 4 appointments and long travel time and waits for consultations). Seven years later, his lids are just fine.
Now that he has been bedridden for at least 3 years, he simply cannot do the rounds of specialists and the rest of that stuff, yet he is comfortable, relaxed, pleasant, on minimal medication and, bless his heart, at 86, his life goes on probably as well as if he had continued the endless appointments. And frankly, I would not have lasted. This is one of the reasons caregivers often do not outlive their less healthy spouses. However, I didn't have decisions to make concerning cancer. That must be very hard for you. Second opinion with a gerontologist or someone who treats the whole patient?

Ella

August 23, 2012 7:21 p.m.

We have been married 50 years now and have worked very hard on our relationship all that time. Now six years into AD I can be sure that I would not want to miss this part of the journey together. The early years of AD were taxing and difficult, but I still feel the connection between us that goes way beyond words. Looks, touches, gazing out the window stroking my husband's arm while I watch a hummingbird in the garden. We share with each other every day. I know from his hugs and crooning that he loves me and knows me even though he cannot talk or do anything that we used to do together. It is enough for now just to be with him. We have had our time together. My life will change if he goes before I do, but I would miss out on the felt intensity of our love if I scattered that energy around. I get out and have help caring for him. But I don't &quot;want it all&quot; now. I want the sometimes exhausting closeness of our last years together. There is a mystical, spiritual essence that I would not trade for anything.

Jane

August 23, 2012 6:57 p.m.

I am new to this and taking it all in. I hope I can cope because I get angry at the new responsibilities involved in running a house (that needs repairs). I do go to excercise, book groups and volunteer. But I also resent having to leave the house so much.
My husband also has cancer and I wonder why the doctors keep coming up with treatments, such as that debilitating chemo, when he is running into depression/dementia anyway.

Dee

August 23, 2012 6:25 p.m.

Perhaps &quot;one size doesn't fit all,&quot; but my wife needs me now more than ever. I could not shave in the morning, look at my face in the mirror, and have any respect for someone who was prepared to walk away from her. It's not always easy but walking away is not an option.

Don

August 23, 2012 6:07 p.m.

Kirsteen: Been there done that!! Didn't work out at all!! My husband has AD &amp; I brought my Mom in to live with us because she was in beginning stages of dimentia. She became so difficult &amp; demandig that I rebelled &amp; my poor sweet man paid the price. I was so exhausted trying to please her &amp; when I FINALLY realized that loving her was never going to be enough, I honored her wishes &amp; moved her back into her own house. My sweet husband of 50 plus years has calmed considerably. My emotions w/my Mother reflected immediately upon him &amp; it took me over a year to recognize it. My Son stays w/my Mom &amp; I am mostly free to take care of my husband exclusively. It was so hard to be happy around my husband when I was dealing w/anger &amp; frustration trying to please my Mom. My husband will ALWAYS now be first &amp; should have been from the get-go. I thought I was wonder woman...what a shock when I found out I wasn't!!!

barbara

August 23, 2012 5:36 p.m.

I cannot imagine having the emotional energy, let alone the time to find a new companion at the same time I am caring for my husband. My love and emotions are centered on him and I feel one relationship at a time is all I want, need and can summon up. Juggling a boyfriend in the mix? If my husband were no longer at home but cared for in a nursing home, maybe,maybe that would be enough of a compartmentalization to free me of the intense feelings I now have and need in order to be his attentive and loving wife. I've seen others -- mostly men (we can speculate why) manage this but their spouses are not at home. For me it's not a matter of vows or religion; it's a matter of only one intense emotional tie at a time. As a woman I can say that my female friends have been wonderful in their support. Perhaps men haven't cultivated male buddies -- so they must look more quickly for women offering warmth and exclusive companionship. The lopsided ratio certainly helps them find someone more easily. But I'm not making moral judgements on this solution to the problem of loneliness. Just saying Hooray for my golden female friends who go with me to the movies, lunch, short shopping excursions and Hooray for bridge and intellectual activities that I schedule every week.

Ella

August 23, 2012 5:07 p.m.

I could never even consider divorcing my wife of 47 years. She made me what I am. I am sticking with her out of love, appreciation, and respect.

Rodney

August 23, 2012 3:35 p.m.

The vow taken states &quot;until death due us part&quot; not a disease.

Jill

August 23, 2012 3:16 p.m.

I find the concept of having a conversation with a person about their 'replacement' - a future companion for when they are 'gone'...absolutely repugnant and most offensive, disrespectful, and selfish. And I am sorry to read this in this newsletter. It's not helpful.

Margaret

August 23, 2012 1:15 p.m.

I have enjoyed receiving this weekly newsletter. I agree that everybody's situation is differant and personal. After taking care of my Mom for 5 years and still doing it. I do not judge anyone. I am happy for any assistance and the free time that my siblings make sure I have. I look forward to many more newsletters. I met a great bunch of folks at our neighbood coffee shop and I stop in there everyday after work for a visit and a laugh before I go home to begin my night with Mom. What a difference it has made.

Mary

August 23, 2012 1:03 p.m.

My Mom moved in about 4 years ago, I always knew this was a stepping stone in between living alone and long term care. This past year has been the most difficult, I miss her terribly. She lives here but it's not her. I feel so guilty for going out or wanting to spend alone time with my husband and daughters. She is not pleasant to spend time with anymore, just angry and difficult. This disease is so incredibly painful for all involved. I truly believe that the love of our family is slowing her decline but as the article suggests, we must also live our own lives. Is there some secret to removing my feelings of guilt?

Kirsteen

August 23, 2012 12:37 p.m.

While reading a book last week I came upon a statement that applies to my role as a caregiver as well as everyother relationship I have. My new mantra is...&quot;Being able to see the path is not the same as walking it.&quot; sometimes I know what I should do for my husband but am just too exhausted to do it at that moment. When others who don't really have a clue make absurd statements &amp; suggestions to me, this helps me accept their words more gently. Try it out...it does help change the way you think.

Marty

August 23, 2012 12:36 p.m.

My spous of 44 years is in mid stage of Alzheimers with a companion in two days a week and just this month - adult day care two days a week. I found a wonderful discussion group at the Library offered when I had time to myself and I loved having real conversations with individuals I'd never met before who were intelligent and interesting. I spoke to the gorup after several weeks how much they meant to me because I no longer had a spouse who could converse. The next week one may in the group suggested he'd like someone to take a walk with after the class to unwind and I realized I'd been maybe sending a signal I was seeking a male companion. I told him I couldn't that week but would the next and we did for awhile until it rained. He emailed me could we get together again. I thought a lot and said sure, why didn't he come to the house to ostensibly drop something off and we three would go to the beach and then my spouse would go back to the house when his companion came. My new friend engaged my spouse , or tried to , in a bit of conversation. It went fine and I was comfortable. But I'm ready to have the conversation with my spouse of how he feels if I do have a relationship with another man once he no longer recognizes me.

Angie

August 23, 2012 12:03 p.m.

Don't agree that one should have a conversation with spouse in early stages of Alzheimer's regarding whether to develop another relationship when the disease progresses. Why raise the issue when it will most likely make the affected person feel bad or, it the affected person prohibits a relationship, the well person will feel guilty. When and whether to have a news relationship is yet another decision that the well person has to make to preserve a life for herself.

Betsy

August 23, 2012 11:54 a.m.

This wonderful post touched me deeply as i too struggle to live in the ambiguity, and the deep loss of our life, and to replace that with a different kind of love and caring. (Wanting this to be over, and wanting it to never end) We are very lucky that our love is strong, but i sure miss my companion. I am learning to stop tormenting myself and him by not trying to talk about things the way we used to - (or just giving up?) It is too frustrating for both of us, but even more lonely....
Thank you again - I will keep this column.

Delores

November 26, 2011 11:14 p.m.

what happens if you do not have the hard conversations with your love one is that you can never say that you talked to them and they said it would be ok to love again or love someone else. when this happens you are not quite sure of the answer they would have given you. just be sure you talk to them in the loving way that they are accustomed to and you will be much happier later.

Patsy

October 30, 2011 5:40 p.m.

I've been married to my best friend, and I miss the relationship we used to have, but I am thankful what we did have when we had it. I can't believe we are ending up this way, he is 54 years old, and is now in a Nursing Home, I miss the normal things we used to do, I greive a new loss everyday.

Jane

October 29, 2011 9:07 p.m.

I think this &quot;both&quot; &quot;and&quot; way of viewing things is a really good way of looking at the sometimes seemingly contradictory feelings that I experience. I know that there is worse to come and I know I will have to cope with it all when it comes. But I try to stay focused on where we are now and what we are dealing with now.

Sue

October 27, 2011 10:57 a.m.

For those of us fortunate enough to have been in a wonderful, fairy tale loving marriage where our AD spouse has always been our best friend/soul mate/lover/spouse and co-parent of our children, an AD spouse declining in front of our eyes is absolutely horrible. And unless someone else is or has been in a similar situation, I think it is impossible for such people to even imagine how horrible that is. However, for someone who has been in such a marriage there is also tremendous depth of love that can still exist while my AD spouse continues to fade in front of my eyes. Yes, the sadness/frustration/stress that exists every single day can be very hard to deal with ... even on the best of days. Yet, somehow the feeling of helping to make this journey as easy as possible for my wife is also nourishing to my soul as I try to remain patient each time I answer the same question, remind her where things are in the house, etc. So, yes, one must accept the reality but one can also choose how to deal with that reality. I say to myself and every single day ... it is what it is.

Allan

October 26, 2011 6:02 p.m.

Sometimes it is hard to accept that this is &quot;our&quot; journey or &quot;our&quot; trip in life. I would like to choose another. But I do believe that I can make of it what I will. I can rant and rave or I can accept that I can't change somethings but I can decide how I respond. Each day I begin again and try to do the best I can. Some days are better than others.

Rosalie

October 26, 2011 11:01 a.m.

My wife is battling early onset of dementia (4-5 years). She is failing in most ways except for one: walking! We walk twice per day (at least before the snow sets in) and it is our best time together. Fortunately, I am still quite healthy and keep to a daily individual exercise regimen, so caregiving has not diminished my optimism about living. I can better meet my wife's needs if I adhere to a sensible wellness plan. Be well,stay active, and know that you are not alone.

Todd

October 24, 2011 11:42 a.m.

If you have never experienced alzhiemer's first hand, you may not know how much people grieve for their loss. They go through each stage of grief, sometimes more than once. Because the disease waxes and wains, there are good days and bad days. By the time the patient is in end stage, the spouse or significant other has already accepted their loss. It is hard to say if it is right or wrong, that is a moral delimma that each individual must take.

MK

October 24, 2011 9:26 a.m.

I take care of a minister that has been diagnosed with Alzheimer's and Parkinson's. They are both devastating diseases. She still knows who I am but it is indeed very difficult and yet there are still good days that we enjoy. Her children and family do not take an active role in her care and their excuses are multiple. I am single and cannot imagine having the time or energy to look for a &quot;companion&quot; while taking care of a loved one with this type of illness. For me, having a hot cup of coffee in the morning in complete stillness, or sitting in a park and feeding the ducks, or having a hot meal without having to do the cooking or the dishes is a blessing most appreciated.

vicki

October 23, 2011 10:13 p.m.

God fearing readers struggling with the issues addressed here search the scripture, pray, and then consider what it is God wants you to do which may not necessarilly be what the world says you should do. Marriage by biblical teaching is closer than any other relationship - you become ONE.
Matthew 25:40 And the King (Jesus) shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me. 41 Then shall he say also unto them on the left hand, Depart from me, ye cursed , into everlasting fire, prepared for the devil and his angels.
That settles it for me, not my will, but thine - you see fear of the Lord is the beginning of wisdom.
Psalm 111:10 KJV
The fear of the LORD is the beginning of wisdom: a good understanding have all they that do his commandments: his praise endureth for ever.
Angela, I will not change the way I look at caring for my wife 24/7 for the past 5 yrs even with the end in sight. Adultery is not my desire - my word can be trusted and so it is with God who has shown his love in the oneness of the marriage relationship. It will be until death do us part. Tough indeed, but a real blessing knowing it could be me in need of the care from her.
As the ways of the world go, you and others are definitely free to make your choice, just never forget those bible believing readers are free to choose too - Judgement is coming!

Gary

October 23, 2011 3:25 p.m.

This site has given me support when the days are dark and hope has disappeared. I thank you all for your courageous comments. We have been on a six year journey with the ups and downs that you each know well... the same but different... I'm still trying to learn to step back but find at the strangest times, I feel so sad and cry when I try not to... after all this time, trying to live one moment at a time without guilt, anger and fear ... May God Bless all our efforts and help us be at peace...

Joanna

October 22, 2011 4:15 p.m.

My husband has mild cognitive impairment, or is maybe just crossing the line into AD. He is still able to function in many day-to-day activities, and has recently really surprised me. I've just had knee replacement surgery and was very impressed with hi ability to provide care for ME! He needed a lot of direction on how to do things, but he did manage very well. He wouldn't be able to cope with bill payments and budgeting, but he could find an ice pack in the freezer and bring it, make coffee, heat up pre-prepared meals, and did a fine job. I keep hoping that his condition will not worsen, but reading this blog gives me hope that I will be able to cope as well as the rest of you. Take good care of yourselves everyone.

joanne

October 21, 2011 8:22 p.m.

Dear Angela,
Thank you for intellegent insight into the world of caring for the one you love with alzheimers. I'm not one to write in public but you have to know how helpful your articles have been for me. You are able to put into words all my feelings and thoughts.
God Bless you.

Kathy

October 21, 2011 4:23 p.m.

I feel in some ways that my mother looks to me as a replacement for my dad who passed away three years ago. She even calls me by his name sometimes when I am helping her into bed. Because I am an only child, my mother is very dependent on me for her full-time care; it feels like a marriage at times. So this article resonated with me when it talks about living with ambiguity. I often look over at Mom after asking a yes/no question and waiting for an answer that never comes and wonder where she has gone when she responds by reading a license plate number off the car next to us. I am grateful that she understands the rhythm of conversation; I miss the actual exchange of thoughts and ideas though. The good news is that the good days when she is connecting are so much richer because of these moments of disconnect. I know that a kiss and a hug are the best language we can share.

Mary Lou

October 21, 2011 3:55 p.m.

Lynn,
I understand about the new person versus
the old personality..I remember the Old to get me through the future..I miss the conversations, planning, wittyness, and all...
Each day I try to find good thoughts of what makes me feel fulfilled and give as much love as I can

lee

October 21, 2011 3:51 p.m.

Thankyou all so much for stating things so eloquently. I am a caregiver for my Dad . HE has dementia. He is 90. My heart aches for every caregiver and i sooooooooo feel the sadness and pain and exhaustion. THe fear, the frustration, the desertion of family and friends. Those who always say...i will come over or if you need help and then they are not there. This disease is a loners disease. Not only for the person who has it but also for the one caring. It is nice to know others are experiencing the same. WHen i read this BLog it always brings tears to my eyes. It makes me face exactly what is in front of me. It makes me sad. It brings to surface all those feelings stuffed so far down because i can't or don't want to deal with them. Who has the time when all you have is time but it is not your own time...ever......
Big hugs and much love to all the caregivers. Respect and admiration is yours.

Maryann

October 21, 2011 2:50 p.m.

I agree with Bob and Sandy, when I married my husband it was for better or worse, in sickness and health. Yes I loose patience with him, but thank the Lord that he helps me put his diaper on at night, goes to bed at 9 and sleeps except when he gets up to go to the bathroom, he now pulls the diaper down and keeps it on all night as I explained to him he might have an accident. I am praying and trusting in the Lord to take him home to heaven when I can't take care of him as I can't really afford anything else. So many scriptures in the Word of God (the Bible) for me to claim and so many in many places that pray for me as it is needed. I love him deeply and he still tells me he loves me. Does he know who I am, I doubt it as he has asked me to marry him and I told him I couldn't as we were already married and he so that made him so happy. We have been married over 58 years with it ups and downs. My daughter-in-law recently kept him for a few hours while I went out to eat with some ladies from our Church, it was so good to be gone for awhile.

Dorothy

October 20, 2011 9:41 p.m.

Lynn got it correct in the first post of the day... it is all going to come crashing down, or so each of us fears.
There is no help for this fear, for it is natural as the changing of the seasons. We can only do what we can do, and must reserve a bit of ourselves to rimind us that if we fall ill or unable, then there are 2 sick people instead of one.
This article helps us to hold out hope for ourselves. We can both be that dedicated caregiver and look to a brighter future... and we must. Hope for ourselves can make caregiving bearable when little else in this disease offers support.
Life gives cruel blows... it happens: deal with it. We saved and planned for retirement adventures, but my wife's AD arrived before the adventures, and 7 years later is still changing out lives. There is no real hope for the AD sufferer, so strength must come from the hope of the caregiver... whether that hope is centered on a creator, an ethos or a desire to be whole and away from the strains of being caregiver.
Bless all of you in this support system. Continue to blow off steam, seek answers, express opinion and be loving caregivers. Never feel guilty for finding strength wherever you can. Best!

DICK

October 20, 2011 7:54 p.m.

My wife passed away about 6 months ago having endured Alzheimer's for about six years. She was 81 as I am. I agree that everyone has different feelings about how to handle your loved one with this horrible distructive disease. I took care of her for about a year and a half at home until I was no longer permitted by her illness to get sleep at night. I guess I was determined to keep her at our home where her bedroom and bath were spacious, especially the shower. The homes I looked at obviously could not compare.I then hired three care givers since she required two 24/7. They became part of our family, caring for her with the same dedication I had. Right or wrong I did not talk to her about her disease and it never entered my mind that I could find anything but guilt should I have sought a companion. I have a close friend who got a companion and I think no less of him for it, but it just was not for me. Frankly, I lost her twice....with the disease and when she suddenly went into a coma and died in the hospital 24 hours after going into the coma. When they turned the oxygen off, for we did not resort to life prolonging measures, her loss to me then was so final. I wept deeply for a good part of my heart was gone too. I still have no one special and am not looking for a companion. However, that is just me and I am comfortable with it. I have prepared a special flower garden with her name on a plaque in it. I find comfort in that display for her. May a cure be found for others.

Bob

October 20, 2011 6:09 p.m.

I found the reframing advice from Dr. Boss to be very helpful. Another area of ambiguity which wasn't explored is the limbo lived by wives who are the caregivers. (I personally know husbands who have reached out for new companions, but no wives.) We are not widows, divorcees, not single and most of us are not looking about for a male companion who certainly would be hard to fit into our long days of caregiving. My monthly support group plus the cluster of women friends I see socially are really all the emotional support I need. But when I mentioned this strange &quot;marital status&quot; I've been in for more than a decade, one group member joked: Not this level, not that level; you're in what I would call the crawl space.
That's my new category and I think I like the mordant humor of it.

Ella

October 20, 2011 6:05 p.m.

My husband died in December of 2010 from complications of disease. We lived with the disease for over 10 years. He was a great dad, husband and grandfather. He had so wanted to see his oldest grandson play basketball in college. It was not to be. There were difficult times and YES, sometimes you prayed for it to be over. Now that he isn't here anymore, you look back and wish that you would have had more patience. I would never have asked him if he would be okay with my seeing another person while he was alive and not &quot;with it&quot; anymore. How cruel!

Sandy

October 20, 2011 2:36 p.m.

Joe, it's great that in caring for your loved one you turn to your God. But many here may not believe in your God, they may be of a different faith. Some might say trusting God is great but when exhaustion, lack of help, abandoment by family and friends, changing smellie pooie diapers, losing the love of your life one minute at a time......well it may not be that simple.
Strength can come from faith and the faith in knowing that love and acceptance of our loved ones will guide us through our, this most difficult journey. I believe that every ones journey is different and whatever any of us finds to get ourselves threw it .....Bless them.

TerryC

October 20, 2011 12:02 p.m.

In caring for our loved ones the best thing to remember is what Jesus said: &quot;Be not afraid.&quot; ... Let's all put our problems, concerns and trust in God.

Joe

October 20, 2011 10:29 a.m.

This newsletter has been most helpful. Sharing our experiences in care giving is helpful to others going through the same. I have just published a book on my experiences, and now available at Create Space eStore: https://www.createspace.com/3699557 for $12.99. It is titled &quot;A Long Dark Night - A Caregiver's Journey With Dementia&quot;.

Philip

October 20, 2011 9:31 a.m.

Lynn, I know exactly how you feel. I retired early to take care of my mother. She is 89 and lives with me. I've lost the mom I had too. Sometimes she's like a 150 pound four year old fighting over toys with my grandkids. She hallucinates and was up all night long roaming the house seeing and hearing things that weren't there. I'm so exhausted from dealing with that that I cancelled my doctor appt scheduled for this morning. I love my mother but I don't like this new version of her at all. My 89 year old aunt also lives with me. Her mind is good, thank God, but she's in a wheelchair and needs a lot of help. I also babysit 2 of my grandkids 3 days a week, a 22 month old and his 2 month old brother. I need a vacation but can't afford to hire a sitter to stay with my mother overnight. A lot of the time I just want to cry until there's no more tears left in me.

Maureen

October 20, 2011 9:23 a.m.

My Mom has alzheimers and sometimes I can hardly remember my real Mom. However, now I know why she did some of the things that she did that was so out of character for her years ago. In fact sometimes she now things I am her sister. In some things the more confused she becomes the easier it is to deal with her. But there is always decline. It is not an easy disease. I worry more about my children as alzheimers runs in my husbands family and now in mine. But I am living for a life with my Heavenly Father so I concentrate on that. Mother is too living for a life with her Heavenly Father even though she cannot express it but her actions do.

Diane

October 20, 2011 9:22 a.m.

I can relate to all of you . My journey through this mine field of diseases , both FTD and Alzheimers Disease has been anything but easy. Like all of you , the man I once. loved so deeply is gone. Replaced by a total stranger. Not very lovable , not the same man , but one who is deserving of my care and devotion. But , after 14 yrs of this hellish existance , as I continue to take care of me , so I can take care of him , I find myself changing how I think. About him , these two dementias and where it's taking me. I look at things less rigidly, and less judgementally. . While we are all in the same boat , we also have different issues and different solutions. I sought out a therapist , who has been a huge support system for me. As well as a support group. One for Alzheimers and a new one we began for those dealing with FTD. But through all these 14 yrs of caregiving , which I began at age 50 , I still never lost sight of what . not only we lost together , but what I was losing so young. I still want a life for myself , away from caregiving , away from the stress , that all this brings. I can not judge any one , nor do I wish someone to judge me. We do not walk in each others shoes. Am I going to make a life for myself? Yes. Is it going to include my husband ? No. Will I continue to care for him , and see that he is taken care of to the best of my ability? Yes.Will I continue to care for him at home as long as possible ? Yes. My decisions are mine . I own them.

Peggy

October 20, 2011 9:04 a.m.

I understand Tom.
Depression sure is a part of this.

Angela C

October 20, 2011 9:04 a.m.

Excellent article! Thank you!

Floy

October 20, 2011 8:50 a.m.

Life with my husband even in good times were not good. Now with his AD I feel life has handed me the final price to pay for what I do not know.
All I know is I'm in this for better or for worse with his AD. The love is not there, never was before not there now. It's not in me
to let him down, but our son I feel has let me down.There is very little kindness shown to me from this young man. Ifound I cannot tell him anything about his father without him getting something much to anger. Or maybe he cannot take anymore because of his job and
his young family.Seems like I have two 8hr jobs. One is mine the other is my husband's.
My job taking care of the home,medication,etc., his job fianaces,and hiring others when something needs fixing, and getting most for the dollar is now mine. I am holding up, but I know it's hard on him as well as me.Real kindness from our son would make my life so much easier.
Life goes on and I pray my health holds up as I am 73 yrs and counting. Thank's for giving me this place to come to, to vent,something I need to do once in awhile. Help at this time is out of the question,because he is in the middle stages of AD and refuses anyone else from outside to be here as he is in denial.
It's day by day, some days good some days not so good. That's life.
Thanks again for being here for me.

Angela C

October 20, 2011 8:44 a.m.

Thanks for this post Angela. It is so beautifully written and so filled with truth.
This focus on ambiguity is so helpful. It is exactly what I have been struggling with lately and that has caused me to be somewhat depressed. I am starting to come to grips with the fact that while I still love my wife deeply, she is in fact leaving me. She is still here and also leaving. For the first time, I have come face to face with the fact that as close as we are, I choose not to die with her. For 38 years we have done all the important things together. And, in fact, we are on this Alzheimer's Journey together. But, I am starting to realize that she has her process in this, and I have mine - and they are not the same process or experience. I am deeply grieving that fact. I can be fully present with her all the way, and yet know that I can not follow her fully into this place, and I choose not to die with her. So sad, but real.

Tom

October 20, 2011 8:40 a.m.

I have been married to my wife since 1987... We had 4 children, 3 living.
In 2004 the signs really started to show but not in a good way; financial distress due and general bad behavior masked by alchol. All this was in the midst of raising 3 children...still is. By 2008 she was &quot;officially&quot; diagnosed but I still didn't accept it. (age 47)
Bottom line, &quot;it hasnt been easy...still isnt&quot; I refer to 1. Cor. 16:13. Be strong, act like men! A lot of divorces are initiated by the onset but no one knows what to do.
My faith sustains me. I can speak volumes on all of this .. but be of good Cheer. God is there. He has honored us through trials.
Remember your vow.. .in sickness and in health.

Joe

October 20, 2011 8:37 a.m.

Thank you so much for this article. My mom has Alzheimer's and it has been such a long journey for us. There is no chance of success with this disorder. She is here but she is also gone. I faithfully visit as she no longer lives with us but it's not the same as having her here mentally. I am ready for her to go to Heaven but at the same time I don't know how I will live my life without her in it. I just have to trust in God.

Trish

October 20, 2011 8:37 a.m.

My mom was diagnosed October 6, 2005. It was completely unexpected and devastating. It wasn't until a year or so ago that I accepted the fact that the mom i once had and knew was gone and that it was time for me to get to know the new changes, the new personality, and the new mom I now have. At some point, I have to grieve for the old mom..but don't seem to have time because I'm taking care of the new mom. I'm afraid it will all come crashing down when I'm least expecting it to. Any advice from someone feeling the same way?

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